Yet again my neurologist surprised me with his dedicated work efforts by calling my home the other night around 9 pm. Because it was so late his call caught me off guard and the first thing I could think of was it had to be bad news? Luckily the call was because he needed my help completing required paperwork for the yearly renewal of my long-term disability. He was asking me a plethora of questions about my personal activities of daily living.

Can you get in the shower without assistance?
Do you have problems getting to the toilet?
Are you preparing your own meals?
Can you be left in the house alone?

To be honest with you, I need assistance with all of the aforementioned tasks to varying degrees on varying days, but for some reason I couldn’t relay that to him. My darn pride just kept creeping in. The worse part is, I know that he needs an accurate description to ensure my continued claim. I naively, tried to pretty up my situation. But I obviously didn’t because during our conversation he bluntly said, “You have been on a continued decline since I started treating you.”

Wow!

What could I say after that? There was just silent agreement on my part.

After the conversation, I was scared. Terrified of my not so distant future. But my husband reminded me that the doctor didn’t tell us anything we didn’t already know and live with on a daily basis.

That’s true but so hard to hear.

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I know what mean about the pride part. It’s hard to accept that part of the illness. That we need help. I was once a very independent woman that had to give up my dream job. And, now I am the complete opposite. Hey it could be worse–I know this. But it’s still not any more easier to grasp. =) Love Nicole! We are in this together. This wonderful crazy roller coaster ride. Yahoo! <3

I need assistance all those things-had M S 42 years-can’t weight bear now-used to be PR Journaist Got one more page to finish on book-Having to manage now autisic son inhome.movng to adapted bungalow-hope finished Jan

While I am not on disability I identify with the fear associated with the progression of your MS. I myself have been on a slow, but steady decline for nearly nine years now. It’s a constant balancing act between my hope that it will stop and acknowledging reality, mixed with a little denial now and then.

What is it about the human psychie that causes us to not always be honest, even when it concerns our precious health. How many times a day do you lie when someone asks, “How are you doing?” Why can’t we be brutally honest and let them know all of those yucky secrets that we may not even trouble our spouses with because of the somewhat gross nature of the non-functioning system of the body. Wouldn’t it be great to just say, just once, “Well I did manage to get myself cleaned up after my bowels seemed to have exploded all over me.” Or just do as my elderly Grandmother used to do, ask how she was feeling, she let you know, totally, for hours, and hours. She didn’t get asked that much after awhile. Smart lady. Overall it is vitally important that we maintain excellent communications with our Dr’s. Every time I go to my Nuerologist or GP I pull out a list of body areas and there afflictions so that hopefully nothing goes unnoticed or unsaid.

I am experiencing this right now. I lie all of the time about how i feel. I question if it’s the MS or if I’m just complaining. When my face goes numb, I think “is this real?” When I’m tired, I wonder if it’s because maybe I just smoked (yeah, weed) or because I’m really fatigued. And my cognitive functions are declining and this has scared me straight. I’m only 28 but am 99% sure I’m going to leave work to deal with this. I know it’s not my fault but I feel like a failure. Anywho, thanks for sharing. I can relate a lot.

Diana, I certainly understand what you are facing. Mine was made for me as I physically could no longer do the work. I could see going through what you have on your hand a lot harder, because you sound like your going to have to make a decision. That’s hard.

I also have severe cognitive malfunction. I have to rely on my family for everything. I can’t even shop for groceries, I get confused. Socially I am at a deficit as I can’t remember conversations. I have learned how to fake it but it doesn’t always work. Friends have fled and I now lead a totally different life. I don’t drive because I forget where I am. I had to quit my job in 2003 before I was diagnosed. I couldn’t do it anymore. We have to accept these changes. It is the hardest thing I have ever had to do and I am a cancer survivor. I wish you good luck on this journey.

Wow. I feel for you… I just got off the phone with someone who was calling me for non-neurologically-related stuff, but it turns out that his daughter was JUST diagnosed with Our Disease… One of the things I told him was that “I’m not used to being *limited* like this; *that’s* one of the hardest things to ‘get used to.’ If you ever get used to it.”

I have been living by this thought~~ ‘YOU SHOULD BE ABLE TO UNDERTAKE AND COMPLETE ANYTHING YOU DESIRE.’ I have noticed lately that I am slowing down and having to ask for help more. I agree with you that it is a Pride Thing.

At least the dr. admitted you are declining. Mine always says, “You’re doing great.” The truth is sometimes overwhelming and sometimes is in the background. Live each day for whatever it becomes. That’s what I’ve been doing for 28 years.

I didn’t know it was necessary to renew long term disability status annually. I haven’t been to a neurologist in years. And during the 8 years I was seeing him, my disability status was never renewed (but my checks still arrive like clockwork). There is now a different neurologist on our island who treats MS patients. I’ve been thinking of paying her a visit, but I’m pretty sure all she’d want to do is drug me.

Yup, I need help with all of the things you mentioned, and more. I am usually alone 2-3 hours a day and use that time to rest in bed. But my husband is planning on a long business trip to the Middle East. The thought of being completely alone for long periods terrifies me. What if I fall? What if I can’t get out of the shower? Those things and more happen on a regular basis. Not to mention, who will prepare my food? Take me places in the car? Help with the pets?

Which is totally off your subject. I could admit to a doctor that I’m on a downhill slide. It’s much harder to talk about it to friends. When I recently started showing up at the synagog in a wheelchair, everyone wanted to know what happened. I had to say, “I fell and sprained my ankle.” Which is true – it happens often. I couldn’t bring myself to say my MS is progressing – rapidly.

OMG, Nicole, did THAT strike a chord! I tend to do the same thing — I like your description of “Prettify!” And why, I ask myself. do I do that? Who am I fooling? Will it be any less true by my not saying it? I just don’t want to hear or think about it. Talk about denial on my part — I live in that state!
Peace,
Muff

I “bump” into paperwork occasionally from when I was first diagnosed (15 years ago now). It always hits me like a freight train! People who see you often may not really notice your decline, but YOU do and I too have a yearly renewal for disability insurance and I hate filling it out because I HAVE to put into words the deterioration of my condition to continue with benefits. It sucks. It’s hard to put a positive spin on that but you sound like you have a very supportive husband and you must focus on what you CAN do. 🙂 Have a great week and thanks for putting into words the very thoughts I have. It helps to know I’m not alone in this.

Because everything about progressive MS is counterintuitive. We want to stay upbeat and have a positive attitude. We want to keep trying. But all that just gets us in trouble. Falling hurts. The fear of falling is real. My hubby sees me at my worst. I like to only think about me at my best. But he keeps me safe.

Reality can be harsh. I’m sorry yours bit you. Mine has snuck up on me on occasion as well. Isn’t it great that we have this wonderful MS community to rely on? Everyone is so present for each other. When I need a little lift, I go online and get it. And when I have a success to share – guess where I go? You’re a part of that special community and I’m so grateful for you and to you. Thanks for taking us along on your ride. I hope we all bring you some comfort knowing that you have all of us – as knowing that we have you has comforted us.

Pride often keeps me from admitting what I and others who know me determined to be true long ago. I try to note most important successes come because somebody refused to hear “you can’t do that.” Still, there is a point where everybody saying something is folly probably indicates a mistake or over reach. Heck, I have a standing bet with my father in law about whether I will work till I am 55. With seven years down and 18 to go, I think my wife would take her father’s side of the bet, but I wouldn’t.

The problem for me is my belief in the premise “You can never know your full potential without failing. If you never fail, you could have done more.” Of course I find failure to listen to my body has led to unnecessary problems. I try to shrug them off and hope my wife keeps her patience with me.

Good luck, and remember there are good times and bad times to play the stoic.

I hear ya loud & clear Nicole! While it is hard to hear the diagnosis & even harder to admit, it is what it is. I was dx in 2000, have been on every approved drug for MS & have also been on a steady decline from day 1. As I said while it is hard to hear (yes I boohooed!) i think I have finally come to accept it. I don’t like it, but I accept it. Pride is a vicious animal, we cannot let it defeat us. I have a lot of help (cleaning, vacuming, laundry), but I can do simple cooking, what I can’t cook we have eliminated or my husband tries to do & I have finally learned to accept help. My children (adults now) & my husband, who works FT, are the greatest & I love them dearly. Be strong Nicole..be honest. Have a wonderful day.

Nicole, I have such admiration for your courage and openness about your struggles with MS. I, on the other hand, have been running away from my diagnosis officially seven years ago with the irrefutable MRI evidence of a cluster of white matter lesions in my corpus callosum. It explained so much – the odd seizure-like activity I’d experienced for years beforehand, initially believed to be mini-strokes; the unbearable fatigue that often overcame me, often rendering me barely able to move my limbs; the brain fog, aphasia that left a once deft wordsmith often searching for simple words. I still try to hide the extent of my disability – even from some of the medical team that treats me. I am still in deep denial – hoping one day to return to working full-time. I have still refused to use a walking aid, instead limiting my shopping excursions to stores with shopping carts. My condition has made me realize that retailers and public accommodations are not mindful of those with invisible physical limitations who do not use wheelchairs. There are few places to rest for those of us with wobbly legs. As always, I admire your strength and honesty.

Nicole,
I can relate to your coversation with your neurologist, what is with them, is there somewhere it is written one has to remind msers of the brutal decline this diagnosis comes with. “WE KNOW”! So why add insult to injury and throw us into the fear factor? Fear takes from us and we have lost enough!

Hugs Nicole, you look like you’ve been beaten down by the MS life. I’ve have one of those days myself. Let’s look toward tomorrow and prayfully things will be great. Yesterday, I asked my husband what it felt like to be 45 (both our ages); I just wanted to know how a “normal” 45 year old felt. His respond was, “like shit!” LOL

Wow. I’m so sorry to hear that. Valerie I’m certainly no therapist, but it sounds to me like you need someone professional to talk with. Please reach out to family and friends they might know what you are going though. I wish I could offer more.